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A LOT is going on in the next few weeks! Watch our social media channels and your email for updates on event registration information and conference and International Batten Disease Awareness Day announcements. ![]()
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Sign up for our email list: ow.ly/rZGZ50REzFy![]()
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#battenadvocatesforacure #battenday2024 #bdsraconference2024
BDSRA President & CEO Amy Fenton Parker checks in from Sioux Falls, South Dakota where she is attending the Sanford/PPALS Pact this week. Thank you to Sanford Health and PPALS Professional Patient Advocates in Life Sciences for providing grants for Amy to attend. Listen to Amy’s update from Monday night and stay tuned for more on our social media throughout the week. ![]()
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#BattenAdvocatesForACure #PPALS #SanfordResearch #BattenDisease
Welcome to the 2024 Annual Family Conference, Dr. Joseph Vigil!![]()
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Vigil, a bereaved Batten father to Mary Payton, is a rehab psychologist who specializes in caring for patients with significant functional impairments/disabilities. His presentations will focus on parental and caregiver support. ![]()
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Join us in St. Louis: ow.ly/BaP250RAU7X ![]()
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#bdsraconference2024
We've been quiet here with life moving at the speed of busy. Ely is doing well right now! After some medication change-ups, we're finding some stability and even GOOD SLEEP! (okay, let's not make it a big deal-- no jinxing! But for real-- it is so refreshing to actually get more than a few short hours of sleep each night!)![]()
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If you can believe it, June is already around the corner, which means International Batten Awareness Day is also right around the corner on June 9! Every year, the BDSRA Foundation does a virtual 5k to raise awareness and dollars to fight the disease that impacts every single part of our little family's daily life. ![]()
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We've set up a team- yep, you guessed it! We're called Team 4 Titus & Ely, and we'd LOVE for you to consider joining us! Click on the link below and choose "join or support an existing team" and search for our team name (to be clear, that's Team 4 Titus & Ely) and join us! ![]()
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Our Batten community has had a rollercoaster year with potential treatments and therapies halting for various reasons. But just a couple weeks ago, we got word that there is another gene therapy on the rise for Ely's specific type. Now more than ever, it is vital to band together to be a voice, a presence, and a support for our rare disease community. ![]()
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You can complete your virtual 5k any way you want! And if you don't wanna 5k-- that's okay too! There is an option to just donate. We're grateful for those standing in these gaps with us, moving us ever closer to a world without batten. Can you even imagine?![]()
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p2p.charityengine.net/InternationalBattenAwarenessDay/Register/Activity/![]()
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#battenday2024 #battenawarenessday #advocatesforacure #CLN2 #adayinthelifeofEly #cantstealmyjoy
Happy Mother’s Day to all Batten moms! ❤️ Celebrating you and your impact deserves more than just one social media post. From serving as a caregiver to advocate, and most importantly, mother, there’s no one tougher, selfless, dedicated, and loving as you. Thank you for everything you do. 💛
